ME/CFS Mortality Study: Research Participants Needed

Editor's Comment: Dr. Leonard Jason is a highly respected researcher in the field of ME/CFS. He is the only person in the U.S., to date, who has done epidemiological research on mortality in ME/CFS. He is now conducting a further investigation of mortality in the patient population. This research is badly needed because the disease is usually described as "benign" - that is, non-fatal.

Were you familiar with someone who had been diagnosed with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)and has since passed away?

Researchers at DePaul University are looking to investigate issues related to ME and CFS mortality by hearing directly from surviving family members, friends, and/or caregivers of individuals who had ME or CFS and are now deceased.

Participation in this study is voluntary. We understand that this is a sensitive topic and that it might be emotionally difficult for some individuals to participate.

However, we believe the information we will obtain from this study has the potential to lead to a better understanding of ME and CFS mortality. The medical community and relevant government agencies need to be informed of the frequency and circumstances of deaths resulting from or associated with having ME or CFS. The purpose of this study is to document the severity and consequences of ME and CFS.

If you know someone who passed away after being sick with ME or CFS, please participate in this important survey. If you can distribute this request for study participants to all whom you know in the ME and CFS communities, please do so. This research can help to make the disease(s) of ME and CFS less invisible for patients and their loved ones.

Participants will be asked to complete a confidential online survey and will be given the opportunity to volunteer for an additional in-person or phone interview. The online survey portion is expected to take up to 1 hour of a participant’s time. Participants must be at least 18 years old.

DePaul University has published many studies of ME and CFS and is a well respected source of information about the disease.
____________________

If you are interested in participating, please use this link to access the survey here.